Happy Christmas!

Christmas is wonderful! Christmas at the hospital probably sounds gloomy, but it isn't. Not here, anyway. The kids have piles of presents from the hospital. I rearranged Sarah's room. Well, I did not do it. i requested that it be done, and i stood watch as three people who worked here did. I thought I had made a simple request. I wanted to turn the bed perpendicular to the way it was, so that i could set up a Christmas tree where Sarah could see it. I wanted a little Christmas corner, where we could sit together as a family and unwrap presents, and I wanted Sarah to be a part of it.

It was quite a thing, watching these nurses and techs maneuver the various lines and tubes. They are all hooked up to big bits of equipment, and connected to the bed. Have you ever played the game where you get a group of people to all grab hands- any hands- and then try to untangle temselves without anyone letting go? It was kind of like that. I kept apologizing. I had no idea it was going to be so difficult, They did it. They assured me it was no problem. I draped a hospital tray with a white sheet and I set up the tree on top. I piled the presents around the tree and scattered them down- not on the floor which is a dirty hospital floor- but on the sheet fell to the floor and trailed a bit.

Josh and Lily came, and we all went to Mass at the Shrine of the Immaculate heart of Mary. We were blessed with confusion about the appropriate time to arrive. We thought Mass was at 4, so we arrived at ten till. It was at five, but the seats were gone long before that. It was beautiful. The choir was good. Some children performed a pageant. Lily loved the angels!

After Mass we came back to the hospital and unwrapped presents. lily chose Sarah's presents first, She unwrapped Sarah's first doll, and she climbed on a chair so she could reach high enough without help to place the doll in Sarah's arms. It was lovely.

Josh and Lily celebrated Christmas Eve at his grandmother's house. I was not there, so I have little to note excpet that Lily asserts that the excursion keeping her out well past her bed-time was worth it.

Christmas morning was lazy here. Sarah and I slept in peacefully. Josh, on the other hand, had a very excited three year old. They did the Christmas morning thing, complete with a feast for breakfast, stockings filled brimful next to the fireplace, and mountains of presents. They did this all at my parent's house.

I did go home, to my parents' house, for Christmas dinner. It too was a feast, followed by yet another round of gifts. Aunt Lucy and Uncle Peter were there, and I had a lovely evening with only minimal worried for my Sarah. We left her in the care of a wonderful nurse.

Our house never did get decorated. That's OK. No one is there anyway. Our hospital room is decorated.

Sarah is looking well. She is still intubated. Tomorrow they are going to reevaluate, but they say they would like to give her a test to see if she is ready to extubate.

They have given Sarah a full sized hospital bed this time. She looks tiny in it! I have, thus far, resisted the growing urge to pile all her stuffed animals around her. We'll see.

The bed is cool. It does all kinds of neat things. It inflates in a rotation in one mode. That keeps her body moving, gently, while she is sleeping- sedated. That way the pressure moves around, so she does not get stiff muscles and bed sores. It also has a "Chest PT" operation. It basically thumps her back, gently but firmly, as you might if you were trying to burp a baby. That solid bounce helps her loosen some of the stuff in her lungs. It raises and lowers and inclines, as hospital beds do. It alarms if we forget to put the sides back up. It knows enough to not want to drop the baby. Its cool.

Christmas, so far, has been pretty wonderful. I have been surrounded by good people and laughter. I have enjoyed a feast. I watched my daughter thrill at one present after another, and very sweetly make sure her sister was not left out. What have I missed really, except the breakfast feast with scrapple and egg nog?

This really is the best place that you do not want to be. Maybe I will make it home before the end of Christmas. I am a Catholic, after all. We celebrate Christmas for a few weeks!

Home and back again

I knew I'd be busy when I got home. I knew that bringing a baby home when I have a child at home was going to be difficult. I even knew that I was going to get less sleep than I needed. I have joked that it is a pleasure to be facing these particular problems. These are normal. Some days have been harder than others, but things have been generally wonderful at home. As long as I set aside schedules, stress levels hover between moderate and manageable.

My calendar reminds me of the doctor's appointments. My cell phone reminds me to feed the baby every three hours. Lily reminds me that she needs to eat. My husband reminds me that I need to eat.

I have been supressing my inner-grinch. I love Christmas. The magic of the season, for me, begins with this mysterious and exciting time. Waiting, anticipating, preparing. During Advent, we read all the prophesies. Wait in joyful hope!

Jesus is coming. There is a contagious energy in the sharing of this mystery. We are not just getting ready for a giant birthday party. He is coming again, and this preparation is not merely superficial. Prepare ye the way! Deck your halls, but don't forget to prepare your heart. This season is for sharing in the mysterious, joyful, and exciting anticipation of the Messiah. A joyful celebration of His first coming is incomplete if it does not remind us to reflect on and prepare for his second coming.

As the decorations come out earlier and earlier, I choose between grinch, self-rightious moralist, and a very quiet version of myself. I try to bite my tongue, but the commercial "25 days of Christmas" undermines Christmas by erasing Advent.

"The people who walked in darkness have seen a great light. (Isaiah 9:2) ...but they ignored it because they had red and green glitter in their eyes.

Inner grinch unleashed.

So, I do not like to put up decorations until it is almost Christmas. We only took the boxes out of the attic last week. Christmas does last a few weeks, but it begins on December 25th. We have a a wreath wrapped in a purple ribbon, because Advent is a penitential season. The table cloth is pink, with a purple runner. Christmas colors won't come out until Christmas.

A twinge of regret afflicted me last night. If I was less fussy about seasons, colors and decorations, my house would be decorated. It is not. It will not be on Christmas.

Sarah is sick. Last night, Sarah got her first ride in a helicopter. They brought her to Children's hospital, in DC, again. She was admitted with pneumonia in both lungs, and RSV. She is intubated and sedated. And speaking of colors, she is a lovely shade of pink today- White and blue are well enough for Hanukkah decoraions and candles. Skin color, not so much.

i do not know how long we will be here. Last night they told me that a normal length of time to be intubated with RSV as bad as hers is about 4-5 days. And then they have to wean- both the vent settings and the sedation. Again. It is discouraging to see her like this again. But there is no arguing that she needed it. Yesterday I hope that breathing treatments would be enough, but clearly not. In truth, she is not less responsive today (sedated) than she was yesterday. Yesterday, she was so miserable, so tired, so unable to fight that my little fighter did not even yell when she got a heel prick, or when she was suctioned. Today, though sedated, she is fiercely resisting these necessary intrusions.

So we are back at Children's hospial. There is no better place in the world to hate to be.

Pandora expressed my feelings well this morning:

But the waves are calling out my name and they laugh at me
Reminding me of all the times I've tried before and failed
The waves they keep on telling me
Time and time again. 'Boy, you'll never win!'
"You'll never win"

But the voice of truth tells me a different story
And the voice of truth says "Do not be afraid!"
And the voice of truth says "This is for My glory"

"Then I heard every creature in heaven and on earth and under the earth and on the sea, and all that is in them, singing: "To him who sits on the throne and to the Lamb be praise and honor and glory and power, for ever and ever!"" Revelation 5:13

One of the many pleasures of parenting is the music. This morning, I woke up humming. "This little light of mine, I'm gonna let it shine!"

It is a long weekend. No one is here. The hospital is mostly empty. The cafe is closed. My doctors are not here. My nurses are not here. So far, the only familiar faces are the resident (God bless the medical residents. They never go home!) and the front desk staff. This depleted staff will not send my baby home.

"Won't let Satan 'poof' it out, I'm gonna let it shine!"

It is easy to slip into self-pity. That is not from God. God has blessed me enormously, and I will not let Satan's whispers muffle God's voice.

It is harder to be patient, as homecoming feels more imminent. Sarah looks well and seems happy. I will spend a few hours with my family having a Thanksgiving feast today. Soon we will be going home. Not today, and not as soon as I had hoped, but soon.

It is a beautiful day. Lily is singing. Sarah slept all night again, so I slept all night again. The sun is shining. The Son is my light, and He fills my life with joy.

"Let it shine, let it shine, let it shine!"

Well, it is the eve of Thanksgiving. I am still typing on a fussy wireless keyboard in the NICU, hoping I don't make too many egregious mistakes.

Sarah's g-tube was placed on wednesday a week ago. Last week I was discouraged when Sarah threw up, just after surgery. It set back feeding by two days. Two days is forever when you are counting down days to go home. Yesterday I was discouraged when, at the end of the day, I got sick. I do not know whether it was the republican debate or the hospital cafeteria salad that did it, but it was awful. I left without even kissing my baby goodbye. Today, I am determined to stay encouraged. It is Thanksgiving, after all. Here is what I am thankful for this year:

I have two beautiful daugters. They delight and amaze me every day.

My husband. He has kept this family focused on Christ, even, maybe especially, when things seem hardest. Sometimes when it has been a few nights since we have seen each other, I miss him awfully. I have to remember what a blessing that ache is. I love and am loved by a wonderful man.

My parents have provided food, rides, support and love. Mom put up, and kept up to date, the caring bridge page. They kept Lily singing and praying. Importantly, they provided consistency through the chaos for Lily.

Which leads me to Aunt Kathie, who came into town expecting to help me at home with a baby but instead was a full time caregiver for a three year old. Sarah and Lily's (truly) Great Aunt made the impossible possible. Figuring out DC traffic so that Lily could come in and out of the city.

Martha, Ann, Denise, Michelle, Jackie-- above and beyond.

Sarah has the best possible care. She is doing better than anyone who met her in her first week imagined. This hospital is amazing, but even before she was born she was cared for by a whole slew of caring, intelligent, amazing doctors.

We have health insurance. Really good health insurance. The tests, the surgeries, the consults, the ICU- It is a blessing to be able to consider what Sarah needs without worrying about money.

Friends. We have made new friends here. Our old friends have been amazingly supportive. We are blessed to have the company of such wonderful people.

Community. St. Paul's community embraced us with prayer and support. St. Paul's Church has had us, at times, wondering why we left Maryland. St. John's, thankfully, reminds us that there is a vibrant and warm community in VA as well. They, who do not know us yet, have reached out as well. We have felt the warmth of being wrapped and raised up in prayer.

Our neighbors are awesome.

Our faith. It is easy to forget that Faith is a gift. Ours has sustained us this year. This year, God told us, very clearly, that going through the motions is not and never was enough. He used difficulty to direct us toward Him.

Music. Lily sings and our hearts are lifted. The radio plays a song with just the message I needed in that moment. I leave Church humming. Pandora makes the hospital room a little less hospital-like. I am thankful for music.

We have our own home.

We have food.

We even have coffee.

With all of these blessings, I refuse to be discourged that the doctor cannot tell me when we can go home. We have to get the sign off from so many teams- it will not happen tomorrow. But, tomorrow is Thanksgiving, and on Thanksgiving, Sarah will be eating more than she ever has- just like the rest of us. She will be getting full amount of food the needs by tomorrow. That has been what we have been told was the final benchmark for her to go home. So, benchmarks accomplished, we go home soon. Just as soon as neurosurgery, plasic surgery, ENT, nefrology, pulmonary, general surgery and (of course) our own NICU team say she can go. Maybe cardiology too. But they will because, as Lily told me, "Sarah is fine now. So we should all go home to sleep."

silos

When Lily was learning to count, among the first things she counted were the silos on the farm.  There were three; three is easy.  She would count them every time we went for a walk, which was most days in good weather.  As she got better at counting, she still counted the three silos every time we walked by them.

Around that time, we took Lily to a city where she encountered towering buildings of many denominations.  "Silos!"

We tried to explain what a silo is, and that those buildings were not silos but we stumbled a bit because the silos on the farm are not in use.  They are not full of food for animals, or anything else.  They are just impressively tall buildings. 

Lily did learn, somehow, in spite of her parents' stumbling, what a silo is.

Shortly after Sarah was born, and immediately hospitalized, Lily did not want to go for walks on the farm anymore.  She had always loved her walks, so we pressed a little.  Lily was afraid of the silos.  Startled, and worried, we wondered why.  "They are going to fall down."

The world had been rocked and things seem to be falling apart.  What do we tell her?  Is it reading too much into her brilliant little mind to have heard a terrible fear of instability?

It was only a week ago when I admitted to myself that my daughter was living out of a suitcase- and so I bought a suitcase.  That may well have been the most emotional purchase I have ever made. I found a leaflet in the NICU which discussed what to expect out of siblings of NICU babies.  Potty training regression. (check.)  Temper tantrums. (check.)  More clingy and sensitive than normal. (check.)  On and on the list went with predictable familiarity.  Then I read the list of feelings which the sibling might be experiencing: they do not understand; they blame themselves; they are afraid they will get sick and get stuck in the NICU; they are jealous. 

What could I say to alleviate her fear?  I wanted to gather her up and tell her that everything would be fine.  Soon, life would go back to normal. 

Sometimes silos fall. 

On Halloween Lily wanted to be a butterfly fairy.   Or a princess.  Or a butterfly princess.  Or a fairy princess.  let there be pink!  Let it sparkle!  Let there be magic and flying! Let it be beautiful, light and happy! 

I was not going to be around to go trick-or-treating, so I took Lily for a walk in her costume.  Skipping down the road, she used her magic wand to turn the cows into frogs.  She turned a puddle into a mirror.  She turned me into a pirate.  Uncle Chuck and his dog, Jethro, were threatened. 

Then we arrived at the silos. 

A meltdown?  Would I have to carry her home? 

Lily lifted her wand and waving it around proclaimed that the silos were beautiful towers!  One purple, one pink and one blue! 

We had a family meeting on Thursday to talk about Sarah.  We have not had these meetings as often as one might like or expect; this in only the second.  At the first, two month ago, our doctors looked at serious problems with five major organs and told us to say goodbye to our precious child.  Now, the kidneys are fine; they cannot find evidence of the earlier finding.  The liver is fine; despite all evidence, she never had biliary atresia.  Her heart is fine.  Her lungs are fine.  Her brain is fine.  Our baby is going home!  One serious concern after another melted away. 

Next week, Sarah will have a surgery to place a tube in her belly.  She cannot coordinate sucking and swallowing yet, and this tube is a better option than the tube she currently has which goes through her mouth. (no danger of aspiration, and no gagging.) When she heals, we go home.  It could be a few days, it could be as long as a few weeks.  But we are going home soon.  Miracles abound!

Through everything, we have depended on our family, our friends and our faith.  Our relationships are stronger.  Our faith is deeper.  Our marriage is better.

We will have to create a new "normal."  But I think Lily is right.  Our silos are beautiful towers. 

The baby is crying1

Lily told Sarah, "you need to get rid of that tube, so we can all go home."  Sarah is breathing, on her own.  We are not ready to go home, but Sarah is breathing.  I have never been so thrilled to hear a baby cry!

Wonders and signs

I cannot believe how long it has been since I have posted here!  Time flies in the hospital, believe it or not.  I kind of feel like the rest of the world should be pause, since I am not there.  Weeks fly by, and my newborn celebrated one month since her birthday on the feast of our Lady of the Rosary.

A bit of business before I forget: My mother has been keeping a caring bridge website up to date with information about little Sarah.

It amazes me how well God knows me.  It amazes me every time He gives me a boost every time I need one, and often before I have thought to ask.

When Josh and I drove away from the doctor where we first learned that there was something wrong with the pregnancy, we were silent.  We were afraid.  I did not know how to process the information, and certainly I did not know how to handle it.  We had the radio on, as always in the car, to Lily's favorite radio station which plays contemporary Christian music. The song came on I will walk by Faith, whose lyrics include the lines,

Would I believe you when you would say
Your hand will guide my every way?
Will I receive the words You say
Every moment of every day?

Well, I will walk by faith
Even when I cannot see.

As we wondered about our peanut sized child, we worried.  We worried about problems we could not see which would inevitably put us on a path we could not predict.  Would we hear His voice?  Would we listen?  It is hard to walk in faith when you really cannot see- but I guess that's what faith is.  I cried as I listened, and I knew that Josh and I would do the best we could to listen to God's voice, and to simply trust that He listens to us.

Later, when Sarah was born, the prognosis was worse than we expected- though certainly not out of the realm of what we spoken to our doctors about.  We were "prepared."  Nothing can prepare you to to hear that your child is not expected to live.  When wecame out of the meeting with the doctors, our older daughter Lily, gave us the pictures she had been working- pictures of Sarah under a rainbow.  God is in control.  We are not, but He loves us and whatever happens, He will take care of our baby.

Another time, when I had just said goodbye, again, to Lily and climbed in the car to drive away I felt that now familiar tear.  Lily ask questions.  Where are you going?  When will you be back?  Can you just bring Sarah home now?  I began to cry and for the first time wonder if I could do this.  I was tired, and getting more tired.  Lily missed home.  Sarah's emotional needs, slip down on the priority list.  How long had it been since I slept in the same house as my husband?  Can I do this?  Again, it was the radio delivering the message: a song I did not know came on and the line I heard was, "I can do all things, through Christ who gives me strength."  Chin up.  God will not give me more than I can handle.

My brother, Mark, forbid me to try and think about everything at the same time.  Just deal with one thing at a time.  I try.  Just take one step, and then another.  And when there are setbacks, try not to dwell on the regression.  Just keep taking steps forward.

Magnificat magazine quoted St. John Chysostom:
"By restraining our grief, on the contrary, we both please God and conduct ourselves becomingly in the eyes of men.  For, if we ourselves do not succomb unrestrainedly to grief, he will qickly take away the portion of grief we feel; whereas. if we give way to excessive grief, he will permit us to become entirely possessed by it.  If we give thanks for it, we shall not be disheartened."

I thought the quote applied well to fear and I have thought of it often since I read it.  Mark's and St. John's advice, sound similar to me and I try to keep them both in mind. 

Sunday morning was particularly difficult.  We had been discussing taking the tube out and letting Sarah breathe on her own.  We were thrilled that she seemed to be making progress.  Then she ad a particularly bad day which culminated in self-extubation (she took the tube out witout the doctor's permission!)- twice!  Twice in six hours.  It was a pretty major setback.  The more than doubled her sedation to be sure it did not happen again, and we stopped talking about getting he ff the vent.  Suddenly, we were talking about a Trache.

As things started to settle, in an artficially induced calm, I realized that the peace Josh and I had been experiencing was missing.  I was not just fearful, I did not know how to hold my head up.  I realized that just in those few days of relative calm I had settled into old habits- forgetting to pray or praying short memorized and unfelt prayers.  I do not blame myself for her episode of agitation, but my lapse in faith was certainly why I had been unable to face these problems.  I told myself that I did not have to go to Church that day- my daughter's health was a valid excuse.  I am still pretty sure that I could convince most people that it was a valid excuse.  God knew, better than I, that I just did not want to face Him.  I was feeling sorry for myself and pleased to immerse myself in my problems.

I went to the hospital chapel, where there was supposed to be mass.  I knew I was too late, and I knew it.  But it soothed my conscience to make an active effort to get to Church.  The chapel was empty.  There on the table, someone had left a pile of prayer cards with the following prayer:

Nade te turbe,Nade te espante,
Todo se pasa,
Dios no se muda,
la patiencia
todo la alcanza.

Quien a Dios tienenada le falta,
solo dios basta.


Let nothing disturb thee;
Let nothing dismay thee;
All things pass: God never changes.
Patience attains
all that it strives for.
He who has God
lacks for nothing:
God alone suffices.

St. Therea of Avila

I went to Chuch, and the priest preached about missing Mass.  The Psalm was psalm 23: The Lord is my shepherd!  Again and again, just when I need to hear God's voice, He speaks.  These days, the message is not subtle.  God's grace is all I need.  His strength, not mine, will carry me.  His wisdom, not mine, must lead.